Respond

I was just diagnosed with chiari 1 malformation.  I have all these symptoms and not sure what is going on.  I am still waiting for test results.  My MRI of my brain showed it.  I'm waiting for EEG and MRI of my brain.  I feel confused and scared at the same time.  I just need someone who is going through this to talk to.  Please respond so maybe I can understand a little bit more.

[dieselann]

It is very scary when you don't know much about it. I have lived with ACM for 25 years. 13 years ago they found it and I had the surgey. I was in lots of pain but after 16 days I no longer had headaches. I was a total of 27 days in bed, 4 in the hospital and the rest at home. I would do it again if I had too. I am 49 years old and I still have some minor sypmtoms but nothing like those awful headaches. I live a  normal life. the scariest thing 13 years ago was there was no information. I was only the 6th person my surgeon new of  world wide and I was his first patient. Now there is all kinds of info on the net.Go to World Arnold Chiari Malformation at www.wacma.com or www.chiariconnectioninternatioal.com you will find all kinds of sites or just type in Arnold Chiari Malformation

[dana_8142]

Hello,
You are not alone.  I am glad that somebody like dieselann responded to your question, she provides some hope.  One thing you should be aware of is that there are a lot of depressed people out there who are not finding results and not handling their diagnosis well, that does not have to be you!  Your diagnosis is not a death sentence!  I'm not saying that you have to feel good everyday, or that you are not allowed to complain, cause lord knows I complain!  But what I am saying is don't let this consume you.  You are the same person today that you were before your diagnosis.  You had good days and bad days before you found out about your ACM, but when you had those bad days I'm sure you didn't give up on yourself.  Don't do that now.  When you have a bad day take it easy, and be positive - tomorrow will be better!  Hang in there, and please when it comes to treatments and surgeries make EDUCATED decisions!  Research a lot and don't be afraid to get second opinions, you won't offend your doc.  Good luck!